My son was diagnosed years ago with T1. His older sister and his mother are both type 1. Things have not gone well on this little island on the Pacific.
My eldest daughter is healthy as she takes care of herself although not perfect at times.
His mother rarely tested and administered insulin by guessing. I hear she rarely tests today.
She had many complications over the years and developed eye complications which required regular laser surgury to stop blood from raining in both eyeballs.
We had many ambulatory calls and hospitalizations when we were married.
My son has followed in her footsteps.
He has had many hospitalizations. Medivacs off a fishing vessel. Medivac down to Saint pauls twice. He has been in shock, had seizures and spent 4 days in a comma last year due to dangerously low blood sugar levels.
He lives a questionable life style.
He now has found work several hours away from here.
I am wondering if anyone has heard or experienced what I have.
His A1C (when he gets it done) usually is 14-18.
We managed to keep him around 6-10 when he lived at home even though he was rebelious.
I can no longer be over in a flash to assist him should something bad happen.
I’m just soooooooooo worried.
This is not the Xmas gift I ever wanted as I’m so stressed out now…
@Last Chance- I read your post will interest and sympathy. You are obviously caught in a difficult situation over which you have little control and I guess are frustrated and exasperated at the loss of control and inability to do anything. I was lucky in some senses in that I was diagnosed very early with T1 and grew up not knowing anything else. I did however have a period of huge rebellion during my teams when I didn't want to be 'different' from my friends any more. I wanted to be normal and eat and live as I wanted- in short I couldn't be arsed! I was found on several occasions either ketoacidotic or hypoglycaemic and in varying states of consciousness by both my family and others. I thank my mum for helping through this. My mum was a teacher and one of life's organisation experts so to have a son who was was 'out of control' I'm sure played merry hell with her mind. However she was very patient and didn't over ride me but spent time helping me to understand what I was going through. She helped me to understand my DM and what the long term effects of poor control were. When I was ready she organised through my specialist nurse for me to attend several helpful education sessions and to go a DM holiday with others of the same age. I soon found that if I controlled my DM my life was not only easier to live with but also more enjoyable to live. I realise that my story and what happened to me might not work or be applicable to others but I am hoping it might be able to give you a few new ideas to try. I think that all you might be able to do will be is to be there for your son when he needs your support and hope he might slowly learn how life could be better for him. My thoughts go out to you. Duncan
That's a sad story Last Chance. I am not sure if "rebellion" or "questionable lifestyle" can totally explain your son's aversion to managing diabetes. I did quite a bit of questionable lifestyling myself (back in the 1980s...) and found that I didn't want to spend a bunch of dough getting loaded and pass out hypo so I'd test, etc. to make sure that the party didn't stop. I freaked a dude out at 2:00 AM once as my BG was a bit higher than I wanted and I wanted to keep drinking so I banged a couple of IV units and he was sure I was shooting heroin. Maybe the strobe lights and fiendish music didn't help the vignette but, of course, one wouldn't keep heroin in an insulin bottle?
Maybe that's not the best "example" but since then, I've sort of continued having things to do besides diabetes and have found that it's been useful. If your son is just saying "no, I'm not gonna test or check anything and will eat whateverthehellI want and damn the torpedos" that seems to me not to be a diabetes related "choice" but a mental health situation/ crisis that should be addressed first. It is crazy not to stay on top of diabetes. It appears he may be older than the "camp" age but some kind of group might help, if it were administered correctly. I'd suggest hanging out here too if he is computer oriented but I am not getting a "read" on what he likes. If he doesn't like anything, that would suggest that depression type of issues may be driving it. It may also be that his mom has got it in his head that diabetes sucks and you can't beat it however that is utterly untrue. When I was younger, I was certain I'd be dead when I was forty but now that I've reached 44, ran my first marathon this year, am much healthier than I've ever been, even *before* I had diabetes, I totally think that it's incorrect to say you can't beat it. It sucks and it's hard but it sucks and is hard if you don't do anything about it too so you might as well do something about it, make incremental progress and work to improve.
Data is critical, even ■■■■■■ test results can provide useful data. If all of your data sucks, say "I'm going to work to fix my after lunch number" (or whatever other time is convenient and see how it goes? If different ratios or adjustments don't work, keep at it and eventually, you should be able to see some improvement. If that number is stubborn, you can keep at it or say "hmmm, maybe breakfast is messing with lunch" and work on two numbers. I suspect that if the numbers are way out of line, some kind of improvement could be made and should be accompanied by a huge celebration. Not a bunch of booze/ drugs/ hookers or whatever "questionable lifestyle" stuff is going on but go look at something cool, the Grand Canyon or a mountain or something. I am, of course, in Illinois and am easily impressed by "wonders of nature" and I'm not saying that's the only thing to look at for a "reward" but there should be something.
I think everyone finds their own motivation for dealing with diabetes. Getting to that "ah ha" moment may be different for different people. I was diagnosed type 1 late at the age of 28 so I knew what it was like not to have diabetes. I went through stages of anger and grieving and denial in my 30s, feeling that it wasn't fair and why me. My "ah ha" moment was having to have laser surgery in one eye. My daughter was 4 years old at the time. It woke me up because I realized that my daughter needed me and I needed to take care of myself, if not for myself, then for her. She's 24 now and I have had no further complications.
Maybe have your ex wife talk to your son about the complications she's had to deal with so that he realizes that's where he's heading. You don't say if your son has a girlfriend/wife/partner but maybe have the "important person" in his life ask him to take care of himself for them if he can't do it for himself.
I'm really sorry that you're having to deal with this. I have seen the worry and pain in the eyes of my family and it's my biggest regret.
Thankyou for your comments and I do hope my son finds his “ah ha” moment. A close friend of mine lost his younger sister due to diabetes complications just after we graduated from highschool.
I knew the seriousness of diabetes early and chose to get education in case my future wife ran into complications. My education is still ongoing.
If anything… All I ask of others on this site, is to do it right and properly look after yourselves.
It’s been 90 years since the discovery of insulin.
We have better personal testing equipment.
We have insulin pumps and better information and supports out there and here on this site.
A parent remains a parent regardless of their childrens age.
We do care. We do worry. We only want what is best for you.
Thanks again. I will continue to read input that is shared on this site.